© CIRP.org 1996-2024 | Please visit our sponsor and host: IntactiWiki.American Journal of Law and Medicine, Volume 30, Issue 1: Pages 41-68, Summer 2004.
Kate Haasd1
Copyright © 2004 by American Society of Law, Medicine & Ethics Boston University School of Law; Kate Haas
Between 1.7 and 4% of the world population is born with intersex conditions, having primary and secondary sexual characteristics that are neither clearly male nor female.1 The current recommended treatment for an infant born with an intersex condition is genital reconstruction surgery to render the child as clearly sexed either male or female.2 Every day in the United States, five children are subjected to genital reconstruction surgery that may leave them with permanent physical and emotional scars.3 Despite efforts by intersexed people to educate the medical community about their rejection of infant genital reconstruction surgery, the American medical community has not yet accepted the fact that differences in genital size and shape do not necessarily require surgical correction.4
Genital reconstruction surgery may involve removing part or all of the penis and scrotum or clitoris and labia of a child, remodeling a penis or creating a vaginal opening.5 While the initial surgery is typically performed in the first month of a child's life, genital reconstruction surgery is not only performed on infants.6 Older children may be subjected to multiple operations to construct "functional" vaginas, to repair "damaged" penises, and to remove internal sex organs.7 Personal accounts written by intersexed adults indicate that some children have been subjected to unwanted surgery throughout their childhood and teenage years without a truthful explanation of theircondition.8
Genital reconstruction is rarely medically necessary.9 Physicians perform the surgeries so that intersexed children will not be psychologically harmed when they realize that they are different from their peers.10 Physicians remove external signs that children are intersexed, believing that this will prevent the child and the child's family from questioning the child's gender.11 However, intersexed children may very well feel more confused about their gender if they are raised without any explanation about their intersex condition or input into their future treatment options.12 The medical community's current practice focuses solely on genital appearance, discounting the fact that chromosomes also affect individuals' gender identities and personalities.13
Operating on children out of a belief that it is crucial for children to have genitals that conform to male/female norms ignores the fact that even the best reconstruction surgery is never perfect.14 Genital reconstruction surgery may result in scarred genitals, an inability to achieve orgasm, or an inability to reproduce naturally or through artificial insemination.15 The community-held belief that an individual's ability to engage in intercourse is essential, even without orgasm or reproductive capability, seems to govern the decision to perform genital surgery on many otherwise healthy, intersexed children.16
Despite the intersex community's rejection of genital reconstruction surgery, no U.S. court has examined the legality of performing these operations without the individual child's consent.17 By contrast, Colombian courts have heard three such cases and have created a new standard for evaluating a parent's right to consent to genital reconstruction surgery for their minor children.18 In response to the Colombian rulings and pressure from intersex activists, the American Bar Association recently proposed a resolution recommending that physicians adopt the heightened informed consent procedures required by the Colombian ConstitutionalCourt decisions.19
This Article questions whether genital reconstruction surgery is necessary in the Twenty-first Century. Part II discusses the history and current preferred "treatment" for intersex conditions. Part III explains the groundbreaking Colombian Appellate Court decisions prohibiting parental consent for genital reconstruction on children over the age of five, and establishing a heightened informed consent doctrine for younger children. Part IV analyzes the protection that current U.S. law could provide to intersexed children. Part V explores how international law may influence decisions regarding the treatment of intersexedchildren.
The term "intersex" is used to describe a variety of conditions in which a fetus develops differently than a typical XX female or XY male.20 Some intersexed children are born with "normal" male or female external genitals that do not correspond to their hormones.21 Others are born with a noticeable combination of male and female external features, and still others have visually male or female external characteristics that correspond to their chromosomes but do not correspond to their internal gonads.22 Individuals who are considered intersexed may also be born with matching male chromosomes, gonads, and genitals but suffer childhood disease or accident that results in full or partial loss of their penis.23 The loss of a penis may lead physicians to recommend that a boy be sexually reassigned as female.24 Although the conditions differ, the commonality of intersexed people is that their gonads, chromosomes, and external genitalia do not coincide to form a typical male or female.25 The current American medical treatment of intersexuals is to alter the individual's internal and external gonads to sex them as either clearly male or clearly female.26
Medical "treatment" of intersexuals has only been practiced in the United States since the 1930s.27 During that period, the medical community determined that intersexed people were truly male or female but had not fully developed in the womb.28 Hormone treatments and surgical interventions were meant to complete the formation of an intersexed adult into a "normal" man or woman.29 By the 1950s, physicians were able to identify most intersex conditions at birth and began operating immediately on intersexed children to eliminate anyphysical differences.30
Prior to the treatment of intersexuality in the United States, intersexed Americans were treated as either male or female according to their dominant physical characteristics.31 This strict male/female delineation is not used in all countries though. Other cultures have treated intersexuals differently, either as a third sex, neither male nor female, or as natural sexual variations of the male or female sex.32 Alternatively, some societies still accept intersexed people without clearly defining their sexat birth.33
For instance, within small communities in the Dominican Republic and Papua New Guinea, there is a hereditary intersex condition known as 5-alpha reductase deficiency that occurs with a relatively high frequency.34 This condition causes male children to be born with very small or unrecognizable penises.35 During puberty, the children's male hormones cause their penises to grow and other secondary male sexual characteristics to develop.36 Most of these children are raised as girls and begin living as men when they reach puberty.37 These communities have accepted these intersexuals without genital reconstruction surgery.38 In the United States, however, a child with the same condition would likely be surgically altered at birth, raised as a girl and treated with hormones to prevent the onset of malephysical development.39
Genital reconstruction surgery became standard practice in the United States through the efforts of John Money, a John Hopkins University professor.40 Money introduced the theory that children are not born with a gender identity, but rather form an understanding of gender through their social upbringing.41 He based this theory on early research done with intersexed children who were surgically altered at birth and raised as either male or female.42 Money's research found that children who were born with exactly the same genetic makeup and physical appearance fared equally well when raised as either females or males. He concluded that chromosomes did not make any difference in gender differentiation, and that children could be successfully reared as either sex irrespective of their anatomy or chromosomal make-up.43 Money attempted to prove his theory by demonstrating that a "normal" male child could be successfully raised as a femalewith Bruce Reimer.44
In 1972, Money made public his experimental sex reassignment surgery on a twenty-two-month-old male child named Bruce Reimer who had been accidentally castrated during a routine circumcision.45 The doctor who examined Reimer shortly after the accident believed that he would be unable to live a normal sexual life as an adolescent and would grow up feeling incomplete and physically defective.46 Money's solution was to perform a sex change operation on baby Bruce and to have his parents raise him as a girl named Brenda. During Brenda's childhood, Money removed all of "his" internal reproductive organs. As Brenda approached puberty "she" was given female hormones to trigger breast development and other female secondary characteristics.47 By removing Brenda's gonads, Money destroyed Brenda's reproductive capability. However, Money believed that by changing Brenda's sex, he would make it possible for her to engage in intercourse and marry.48
Early reports of Money's experiment claimed that the operation was successful and that Brenda was a happy, healthy girl.49 Money's research was published throughout the world, convincing doctors that gender was a societal construct, and therefore intersexed children could be raised unconditionally as either male or female.50 He believed that the only way to ensure that both the family and the child would accept the child's gender was if the child's genitals looked clearly male or female. Based on this theory, babies born with ambiguous genitals or small penises and baby boys who were accidentally castrated were surgically altered and raised as females.51 Similarly, children born with mixed genitalia, gonads, and chromosomes were surgically altered to fit the definition of a "normal" male or female.52 Following U.S. lead, other countries also began to practice routine genital reconstruction surgery on intersexed infants.53
Despite the widespread use of genital reconstruction surgery, there is no research showing that intersexuals benefit psychologically from the surgery performed on them as infants and toddlers.54 No follow-up studies were ever done on adult intersexuals who underwent genital reconstruction surgery as children.55 In the late 1980s, researchers attempting to disprove Money's gender identity theory began searching for Brenda, the subject of Money's highly publicized research.56 The boy who was raised as a girl was now living as a man and had changed his name to David.57 In 1997, Milton Diamond and Keith Sigmundson published an article rebutting the results of Money's famous gender research.58 The publicity caused by Diamond and Sigmundson's article led to a biography of Reimer by John Colapinto. When Colapinto interviewed Reimer in 1997, Reimer admitted that he had always been certain that he was not a girl, despite being deceived by his doctor and hisfamily.59
Reimer suffered emotional duress at all stages of his development, despite the corrective surgery that was meant to make him "normal." In his biography of Reimer, Colapinto describes the painful experiences that Reimer suffered throughout his childhood and teenage years.60 During her childhood, Brenda did not fit in with her peers and felt isolated and confused.61 As early as kindergarten, other children teased Brenda about her masculinity and failure to adopt "girl's play."62 Although her kindergarten teacher was not initially told of her sex change, the teacher reported realizing that Brenda was very different from other girls.63
In addition to her failure to fit in socially, Brenda was constantly reminded that she was different by her parents and Dr. Money. During her visits to John Hopkins, Money would often force her to engage in sexual role-play with her twin brother in order to enforce that she was a girl and he was a boy.64 Her genitals were scarred and painful as a child and she hated to look at them.65 She became suspicious that something terrible had been done to her, primarily due to the frequent doctor's visits with John Money. During these visits, Dr. Money and his associates questioned Brenda about her genitals and her gender identity.66 Rather than enforcing her gender identity, the medical interventioncompounded the trauma caused by her medical condition.
One particularly traumatic procedure inflicted on intersexed children was not discussed in the biography of David Reimer. Intersexed children who have artificially created vaginas must undergo vaginal dilation procedures throughout their early childhood.67 In order to ensure that the newly created vaginal opening does not close up, the child's parents must insert an object into the child's vagina on a daily basis.68 This procedure has sexual implications that may be emotionally traumatic formany children.
As a teenager, Reimer rejected his assigned sex and refused to take his female hormones. He reported engaging in typically male behavior throughout his teens. He dressed as a male, chose a trade school for mechanics, and even began urinating standing up.69 When Reimer's parents finally told him that he was born male, he immediately chose to adopt a male identity and changed his name to David.70 He had a penis constructed and implanted, and underwent breast reduction surgery to rid himself of the breasts developed through estrogen therapy.71 There is no procedure that can replace the gonads that were removed as part of Reimer's sex reassignment surgery. There is also no cure for the deception that he experienced upon learning that his parents and doctors had lied to him about many aspects of his life.72 The trauma of learning about his condition caused David to attempt suicideon several occasions.73
David is now married and has adopted his wife's children.74 His story reads as a happy ending to many people. However, David could have avoided the gender dysphoria, loss of reproductive capability, and many years of therapy that resulted from genital reconstruction surgery. These experiences are not atypical in the intersexed community. According to many intersexed activists, the comfort of being raised in a clear gender role does not outweigh the pain of deception or the physical side effects associated with the surgery.75
Despite the emotional and physical scars that people like David Reimer face from genital reconstruction surgery, the majority of American physicians continue to encourage early childhood surgery.76 In some cases, physicians have insisted on performing genital reconstruction surgery on teenagers without their consent.77
In 1993, an intersexed activist named Cheryl Chase began a support and advocacy group for intersexed adults called the Intersex Society of North America ("ISNA").78 Chase was born with a large clitoris, which was removed when she was an infant.79 When she was eight years old, her internal gonads were removed without her knowledge or consent.80 Because of the surgery, she is no longer capable of having her own children or obtaining orgasm.81 Today, Chase and other advocates are vocal about their hope for a moratorium on the invasive treatment of intersexedchildren.82
ISNA members have contributed significantly to the debate over genital reconstruction surgery by providing personal insight into the effects of surgery on intersexed adults. As of the late 1990s, more than 400 intersexed individuals from around the world contacted ISNA and recounted stories similar to Ms. Chase's.83 According to ISNA, sex change operations and genital normalizing surgeries should not be performed on children until the child has the ability to consent personally to the operation.84
At this point, there is insufficient proof that intersexed adults who are not operated on fair any worse than intersexed adults who have had genital reconstruction surgery as children.85 The only research that has been done on intersexed adults who have not been surgically altered also comes from John Money. In the 1940s, prior to his well-known study on Reimer, Money interviewed many intersexed adults about their gender identity and upbringing.86 To his surprise, he found that intersexed adults who had not undergone genital reconstruction surgery had a gender identity comparable to other adult males and females.87 Unfortunately this research was done as part of Money's doctoral thesis and was neverpublished.88
Public authorities, the medical community and the citizens in general must make room for these people who have been silenced until now.89 In 1995, Colombia's highest court, the Constitutional Court, addressed the legality of performing gender reconstruction surgery on children.90 The Constitutional Court has issued three decisions on the constitutionality of genital reconstruction surgery, and, as of the publication date of this Article, it is the only court in the world to have rendered an opinion on this issue.91 The first case that the court considered was brought by a teenage boy who had been raised as a girl under circumstances very much like David Reimer's.92 Several years after this first case, the court decided two other cases involving children born with intersex conditions.93 These three cases have limited parents' rights to choose genital reconstruction surgery fortheir children in Colombia.
The first case, Sentencia No. T-477/95 [hereinafter Gonzalez, involved a male infant who was accidentally castrated during circumcision and was subsequently subjected to a sex change operation.94 His physicians performed the sex change operation so that his genitals would conform to societal norms and he would be capable of sexual intercourse as an adult.95 As a teenager, Gonzalez learned of the operation and sued the doctors and hospital that allowed the operation to be performed without his consent.96 The Colombian Constitutional Court heard Gonzalez's appeal and found that this operation violated the boy's fundamental right to human dignity and gender identity.97 The court based its decisions on the Colombian Constitution and the international covenant on human rights guaranteed by the Inter-American Court of Human Rights.98 The court ruled that doctors could not alter the gender of a patient, regardless of the patient's age, without the patient's own informed consent.99
Several years after Gonzalez, the parents of two children born with intersex conditions brought their cases to court seeking the authority to consent to surgery on behalf of their minor children.100 In both cases, the children's physicians had recommended genital reconstruction surgery, but refused to perform the surgery without each child's consent.101 For the first time in the world, a court addressed the issue of whether parents should be allowed to consent to genital reconstruction surgery on their intersexed children. Although these cases were not identical to Gonzalez, the hospital feared that if it performed genital reconstruction surgery on any child without the child's consent, it could be held liable under Gonzalez.102 The Colombian Constitutional Court heard both cases on appeal.103
In Sentencia No. SU-337/99 [hereinafter Ramos, the Colombian Constitutional Court considered the case of an eight-year-old intersexed child raised as a girl and diagnosed with male pseudo-hermaphroditism.104 Ramos was born with XY (male) chromosomes but due to her inability to process male hormones, her external genitalia did not fully develop.105 Ramos had a small penis (three centimeters), folds of skin that did not contain testicles, male gonads, and a urinal opening at the base ofher perineum.106
According to the documents received at the trial court level, Ramos' doctors were not aware that she was intersexed until she was three years old.107 Until that point, Ramos' mother had raised her as a girl without questioning whether she might not have female chromosomes. When Ramos' pediatrician became aware that the child was intersexed, the doctor recommended that she receive genital reconstruction surgery to remove her small penis and gonads and to construct a vagina.108 The doctor recommended the sex change operation because although Ramos had a small penis, it would never grow to the size of a typical penis, and it would never function properly.109 Additionally, Ramos had been raised as a girl thus far, had a female name, wore feminine clothing, and identified with the social role of Colombianwomen.110
Ramos' mother brought this action to force the hospital to accept her consent on behalf of Ramos so that the doctors could proceed with the surgery.111 Ramos' mother alleged that if the hospital waited to perform surgery until Ramos could consent for herself, the child would be psychologically harmed because she would grow up without a clear gender identity.112
However despite being raised female, the trial court found that Ramos' gender was ambiguous because "in some aspects she behaves like a woman and in some aspects like a man."113 It also concluded that every person should have the right to develop his or her own gender identity as a part of the development of his or her personality.114 The trial court stated that nobody could determine what the gender identity of this child would be except for the child herself, denying Ramos' mother the right to consent to surgery.115 Ramos' motherappealed the case to the Constitutional Court.
By the time the case was heard on appeal, Ramos was eight years old.116 After considering medical information and briefs from experts around the world, the Constitutional Court upheld the trial court's decision denying Ramos' mother the right to consent to genital reconstruction surgery for her child.117 In its decision, the court referred extensively to the Colombian Constitution, as well as international laws and norms.118
The court considered the gravity of the procedure and the negative effects it could have on the child if she were to reject her assigned sex, and found that substitute judgment should not be allowed. The Constitutional Court quoted the trial court's opinion, noting that it would be wrong for anyone to consent to a sex change operation other than the child herself.119 In reaching its conclusion, the court discussed the lack of evidence of any psychological harm to children that are not operated on, and the existence of actual evidence of psychological harm to children that have had such operations.120
The Ramos decision did not seem to rely on the individual facts of the case, but rather on the overreaching harm of the surgery as compared to the unproven benefits. However in its next case, the Constitutional Court seems to have made its decision based on the individual facts of the case, primarily that the surgery had already been performed with no major problems.121
In the Constitutional Court's next decision, Sentencia No. T-551/99 [hereinafter Cruz,122 the court relied heavily on the information provided in Ramos.123 However, the decision in Cruz was substantially weaker than both of the previous decisions, limiting its prior holdings to children over the age of five.124 Cruz was born with XX (female) chromosomes and male external genitalia.125 Her parents were seeking to have her clitoris/penis removed or reduced in size so that she would look more female.126 At the age of two, Cruz was already aware that her genitals were different from those of her family members.127 However since Cruz was much younger then Ramos, the trial court did not rely on facts regarding Cruz's own gender identity. After hearing the case, the trial court held that Cruz's parents could consent to genital reconstruction surgery on her behalf if their consentwas "informed."128
Cruz was only three years old when the case was brought to the attention of the Constitutional Court and had already undergone genital reconstruction surgery.129 The Constitutional Court decided to hear the case in order to set a standard for the lower courts to follow in the future.130 The court found that Cruz's parents did not really understand the implications of the operation on their child's life. Believing that their child would be "normalized" by the procedure, the parents were given the impression that surgery was their only option.131 Since the parents were not properly informed about the procedure or provided alternative options, the court held that Cruz's rights had been violated despite her young age.132 Although it was too late to make any changes in the decision that was already made for Cruz, the court ordered that an interdisciplinary team be put together to support the child and her family in the future.133
In this decision, the court could have followed its reasoning in Ramos to ban parental consent togenital reconstruction surgeries on all children.134
However, instead of following its own precedent, the court decided that parents should be allowed to consent to surgery on children under age five.135 The court explained that Cruz was too young to have formed a gender identity.136 By prohibiting parental consent for the surgery, the court stated that it would be intruding into the realm of family privacy.137 The court also stated that prohibiting this surgery altogether would be like a social experiment in which children were the subjects.138 Had it decided to prohibit the surgery on young children, the intersexed children following this case would be the first children in the country to be prohibited from obtaining sex assignment/reconstruction surgery.139
While deciding not to make room for the intersexed, the court made clear that it did not intend to leave the decision whether to operate at the full discretion of the parents either. It reasoned that parents might be fearful of intersex conditions and discriminate against their children, consenting to operations not truly in the child's best interest.140 Finally, the court concluded that the medical community should establish a protocol allowing parents to consent to genital reconstruction surgery only after they establish that it is truly in their child's best interest, creating a new form of "qualified and persistent, informed consent."141
The court in Cruz gave Colombian parents the right to substitute judgment for infants and young children who have already achieved consciousness of their bodies; however, parents can only give consent after fully understanding the consequences of the surgery for their child. In Cruz, the court clarified that its decision to withhold parental consent in Ramos was based on the fact that Ramos was eight years old when her case was decided.142 Cruz narrowed the individual consent doctrine to apply to children over the age of five, holding that intersexed children over the age of five must give their informed consent before undergoing genitalreconstruction surgery.143
In Cruz, the court determined that in order for parental consent to genital reconstruction surgery to be valid for children under the age of five, three criteria must be met: (i) detailed information must be provided, and the parent must be informed of the pros and cons that have sparked the current debate; (ii) the consent must be in writing, to formalize the decision and to ensure its seriousness; and (iii) the authorization must be given in stages.144 This last qualification is intended to permit the parents the time to bond with their child the way that he or she is, and not to make a prejudicial decision based on shock at the baby's appearance.145 The court stated that it would be up to the medical community and the legislature to determine the specific details for the consentprocedure.146
Doctors generally recommend surgery for intersexed children at birth.147 Ramos' mother was forced to wait until Ramos was eight years old only because the trial court originally denied permission for her to give consent for the operation.148 However important the investigation and dicta was in Ramos, most intersexed children will not benefit from it. Most often, surgery will be performed when the child is still an infant and only the heightened informed consent will be directly applicable to them.149 By limiting the holding of Ramos in Cruz to children over the age of five, the court diminished the significance ofRamos.
All three of the Colombian Court's decisions could have fundamentally altered the individual rights of intersexed children in Colombia. Instead, they have only given the parents of intersexed children the right to more information before they consent to genital reconstruction surgery. Perhaps some parents will obtain enough information to decide to decline these operations. However, in the end, it is still the parent and not the child who will be able to determine what gender the child will be, whether the child will be able to reproduce, and who the child will be allowed to marry. Given the opportunity to make a huge difference in the lives of intersexed people around the world, the Colombian Court's decision did not adequately protect this "marginalized and forgotten minority."150
Despite the Colombian Court's reticence about banning infant genital reconstruction surgery, Colombian law still provides far more protection for intersex children then current American law. The Colombian Court's decisions have increased the world's awareness of the problems with genital reconstruction surgery and reopened the medical debate regarding genital reconstruction surgery inthe United States.
The United States does not currently provide any procedural protection for intersexed children. In the United States, doctors are not required to receive the consent of intersexed children before performing genital reconstruction surgery.151 Neither are parents routinely given sufficient information to make an informed decision on their child's behalf.152 Currently, the United States lacks even the standard for informed consent instituted after the Colombian Court's finaldecision in Cruz.153
Thus far, there has been no legal challenge brought on behalf of intersexed children in the United States. Intersexed adults who have inquired about suing their doctors for performing genital reconstruction surgery that altered their gender have met resistance.154 Intersexed adults have been told that because the doctors followed standard medical practice when they performed the surgery, the doctors are not liable for medical malpractice.155
Unlike the Colombian Constitution, the U.S. Constitution does not have specific provisions protecting a child's right to bodily integrity. However, the Constitution has been interpreted to protect privacy rights, including the right to marry and reproduce, and the right to bodily integrity generally.156 Common law also provides some protection for children when there is no "informed" consent, or when a parent's consent or lack of consent to medical treatment is found to be contrary to the child's best interest.157 In addition to case law supporting the need for informed consent and the best interest of the child, there are recent federal and state statutes protecting female children from genital mutilation.158 Thus, while no intersexed Americans have successfully sued a physician or hospital for conducting early genital reconstructive surgery, they may have grounds to sue based on female genital mutilation laws, the constitutional right to privacy and lackof informed consent by their parents.
The U.S. Constitution protects individuals from overreaching government powerthrough the Fourteenth Amendment, which states "No state shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States, nor shall any state deprive any person of life, liberty, or property, without due process of law ..."159 The U.S. Supreme Court has interpreted the Fourteenth Amendment as protecting individuals from government action that infringes upon certain "fundamental rights" considered "implicit in the concept of ordered liberty."160
The Supreme Court has found that the right to bodily autonomy, the right to choose whether or not to reproduce, the right to marry, and the right to make decisions about how to raise children are all fundamental privacy rights.161 The government may not violate a person's liberty by infringing any of these rights without first proving in a court of law that there is a compelling state interest that must be served, and that the method that the government is using is narrowly tailored to achieve a compelling governmentalinterest.162
Historically, children have not been accorded the same constitutional rights as adults. A child's parents and the government are allowed to restrict some rights that would be held fundamental for an adult.163 The Supreme Court has also recognized a fundamental right to family privacy, according parents a high degree of respect regarding decisions they make about their child's upbringing.164 This includes the choices parents make regarding their children's medical care.165 Despite the Fourteenth Amendment right to family privacy, the parents' rights must be weighed against the children's rights to be protected against harm. The doctrine of parens patriae articulates the government's interest in protecting the rights of vulnerable individualsfrom harm.166
The doctrine of parens patriae allows the government to interfere with parents' choices about how to raise their children when the children may be harmed because of the parents' actions or inactions.167 Generally, the government interferes with parental decisions under laws prohibiting parental abuse or neglect.168 In the case of intersexed children, the government may have reason to override the parents' decision to perform surgery if thesurgery would harm the child.
The Fourteenth Amendment does not prohibit an individual from violating another individual's fundamental rights. Thus, a child cannot generally sue a hospital or a physician for an infringement of his or her constitutional rights. For there to be a constitutional violation, there must be state action.169 If genital reconstruction surgery is performed at a state hospital, then there is state action allowing the child to sue the hospital directly. If the surgery is conducted at a private hospital, there may not be state action. In that case, in order to implicate the Fourteenth Amendment, an intersexed child who is about to be subjected to genital reconstruction surgery must seek an injunction against the hospital prior to the surgery.170 If a judge orders the surgery to progress, there is state action, and the child may claim a constitutional violation.171 If the child successfully claims that the surgery violates a fundamental right, then in order for the court to order the surgery over the objection of the child or his or her court appointed representative, the proponents must prove, by clear and convincing evidence, that the surgery is in the child's best interest.172 This standard is high, and in order to prevail, the proponent of the surgery must establish that there are no less restrictive means to accomplish the same result.173 Since there are no studies proving that genital reconstruction surgery psychologically benefits children, and there are testimonial accounts that genital reconstruction surgery causes psychological and physical trauma, it is unlikely that the court would find that therewas clear and convincing evidence of best interest.
Included in the Fourteenth Amendment right to privacy is the right to bodily autonomy, which protects individuals from intrusion by the government into their health care decisions.174 This right includes the right to choose to forego medical treatment, even if foregoing treatment may result in death.175 For the most part, children are not accorded the right to choose medical treatment or to choose to forego medical treatment without parental consent, despite the fact that it has been found to be a fundamental right.176 The reason that parents are allowed to consent for children is that a child may not be able to understand fully the consequences of their own consent because of their age or inexperience.177
There are several exceptions to the rule requiring parental consent to treatment. The first exception accepted by several states by statute is the "mature minor" exception.178 Minors who are considered mature enough to make their own medical decisions need not obtain parental consent to medical treatment, and may object to medical treatment that their parents choose forthem.179
Many states have also provided exceptions to parental consent requirements for children seeking treatment for drug addiction, mental health treatment, and testing and treatment for sexually transmitted diseases.180 The logic behind these exceptions is that these treatments are very personal, and if required to seek parental consent, many children would forego treatment. If children could not be treated for HIV, drug addiction, or mental illness, they would likely place themselves and others in danger.181
These exceptions take into account the fact that parents do not always act in their child's best interest, and a child may suffer abuse or psychological harm if required to seek parental consent to certain treatments. The right to choose whether or not to undergo genital reconstruction surgery should be an exception to the general rule allowing parental consent to treatment of minors. Genital reconstruction surgery is a personal choice that children should be allowed to make on their own in certain circumstances, or, at a minimum, in conjunction with their parents. It is difficult for many children to learn about their intersexuality. However, it is also hard for children to learn to cope with pregnancy, drug addiction, mental illness, or their HIV positive status. In contrast to intersex conditions, all of the above medical conditions are free of parental consent requirements under certaincircumstances.
Genital reconstruction surgery is arguably the ultimate infringement of an individual's bodily autonomy. Genital reconstruction surgery can cause a child significant psychological and physical harm.182 For these reasons, parents should not be allowed to make the decision to alter surgically their child's genitals without the child's consent absent clear and convincing evidence that it is in the child's best interest. If the state participates by allowing the procedure to be performed at a state hospital or by ordering the procedure over the child's objection, then there may be a constitutional violation of the child's rightto bodily autonomy under the Fourteenth Amendment.
The right to choose whether or not to reproduce is a fundamental right and, accordingly, certain restrictions are placed on the government's right to interfere with decisions bearing on reproduction.183 For example, all minors regardless of age have the right to seek an abortion without undue burden from the state, though the state may act to ensure that a woman's decision is informed.184 Therefore, even when state law requires minors to receive parental consent before seeking an abortion, minors are permitted a judicial bypass, allowing them the right to prove to a court that they are mature enough to make the decision to have an abortion without parental consent.185 Children may also have the right to seek contraception, treatment for pregnancy, and childbirth without parentalconsent.186
Because reproduction is a fundamental right, parents are limited in their ability to consent to sterilization procedures for their children. Generally, sterilization is raised in the context of a parent who wants to sterilize a handicapped child to protect the child from the harm of a dangerous pregnancy. If there is an objection made by the child or an advocate for the child, then a court cannot order the procedure against the child's objections without affording the child due process.187 The child must be appointed an independent guardian ad litem, and receive a fair trial at which the court must determine by clear and convincing evidence that the operation to remove the child's gonads will be in the child's best interest.188
As with all people, some intersexed adults do not have the ability to reproduce even without genital reconstruction surgery.189 Others will retain their full reproductive capacity even after the surgery is performed.190 However, some intersexuals have the ability to reproduce either naturally or artificially and are denied that right by the removal of their gonads and other reproductive organs. For those children whose gonads are removed to complete their physical transformation, their fundamental right to reproduce has been violated. For example, a child born with male chromosomes and sexed at birth as female will have her gonads removed, thus,effectively sterilizing her.
Based on the lack of evidence of the effectiveness of genital reconstruction surgery, it would be difficult for a court to determine that this procedure is clearly in the child's best interest. If there are pros and cons to performing the surgery, the court must decide in a manner that will not violate the child's fundamental right toreproduce.191
Genital reconstruction surgery may inhibit or completely interfere with a child's fundamental right to marry. In the United States, there are currently no states in which it is legal to marry someone of the same sex.192 In 1993, several gay couples challenged the prohibition against same-sex marriages under the Hawaii Constitution.193 The Hawaii Supreme Court ruled in favor of the plaintiffs and allowed the first gay couples to marry legally.194 In reaction to the ruling, the Hawaii state legislature immediately amended their own constitution to prohibit same-sex marriages.195 The federal government reacted to the first gay marriages by passing the Defense of Marriage Act, which allows states to refuse to recognize same-sex marriages that are legally valid in another state.196 Given that 3% of the world population does not fit into a clearly defined sex and still engage in marriage and child birth, it would be wise tore-think this prohibition.
However, given the laws as they currently stand, genital reconstruction surgically defines an intersexed person as male or female, thus, prohibiting them from marriage to a person of their "same" gender. Intersexuals are in a unique position before they undergo genital reconstruction surgery because they can petition the court to change their legal gender from female to male or male to female without having to undergo a sex change operation. They must prove that they are intersexed, that they have unclear genitals, and that they identify as the opposite sex, and their birth certificate may be altered.197
Once an intersexed person has undergone genital reconstruction surgery making his or her genitals clearly male or female, he or she cannot then choose to change his or her birth certificate without having a second round of surgeries performed.198 For example, if a child born with male chromosomes or mixed chromosomes is surgically assigned a female gender at birth, that individual would be prohibited from marrying a female later in life without first undergoing another sex change operation.199 In this case, if the initial gender reconstruction surgery had not been performed, this person would be considered a male, not a homosexual female,and thus would have a fundamental right to marry.
By choosing a gender for the child and performing reconstruction surgery at birth, the doctors may be infringing on an individual's ability to marry as an adult. The imposition of additional surgery to change their assigned sex would add such high financial and emotional costs on the individual that it may prohibit some, otherwisequalified, intersexuals from marrying.
Physicians must receive informed consent from all patients before they treat them for any medical condition.200 If physicians fail to obtain informed consent from their patients, they may be liable for medical malpractice.201 Under the informed consent doctrine, a patient may even choose to refuse life saving treatment after weighing their treatment options.202 The informed consent doctrine originated in the tort doctrine of battery, which includes intentionally touching a person in a way that they find harmful or offensive.203 The surgical removal of part or all of a child's genitals must only be done after receiving informed consent or it may be considered battery.
Absent a recognized exception allowing children to consent to their own medical treatment, parents will generally be allowed to give or withhold consent for medical treatment on behalf of their children. In the United States, genital reconstruction surgery is not currently a procedure that children are allowed to consent or object to without their parents' participation. For informed consent to be valid, the parents must be informed of the nature and consequence of their child's medical condition, as well as the various treatmentoptions available.
The Colombian standard of informed consent ensures that doctors provide parents with all of the known information about intersex conditions over a prolonged period of time. Doctors must provide surgical and non-surgical options for treatment, and refer parents to support organizations for intersexed individuals.204 This model ensures that parents are not deceived about their child's prognosis, and that they understand that genital reconstruction surgery is not theonly solution for their child.
In the United States, parents of intersexed children are not given enough information to make a truly informed decision about their child's treatment.205 Some parents are not told that their child is intersexed, but instead that their child is a girl or boy with "unfinished" genitals that the doctor will repair with surgery.206 Physicians may also tell the parents that their baby will have "normal" genitals after surgery.207 Surgery may make the child's genitals look more clearly male or female, but it will also leave scarring and possibly diminish sexual functions.208 Generally, more than one surgery is needed to alter completely the genital appearance, and the average number of surgeries is three or more.209 Surgery and check-ups will continue through the child's early years and may be extremely stressful for the child and his or her parents.210
Additionally, parents must understand that while surgery will make intersexed children look more similar to their peers, it will not change their chromosomes. Even with hormone therapy, many intersexed youth will endure gender dysphoria.211 They may feel confused about their gender despite having genitals that look clearly male or female. Intersexed adults may decide that their assigned gender is not their gender of choice. This might promp the desire for additional, more complicated surgeries to perform a complete sex change operation.212 Most of these facts are not presented to the parents of intersexed children at the time that they approve genital reconstruction surgery.213 If parents are encouraged to consent to surgery without being told of the risks and sideeffects, their consent is not truly informed.
There are several exceptions to the rule for informed consent. The first exception is when there is a medical emergency and a person's life or health is in immediate danger, the doctors may proceed with a procedure if they have not received instructions to the contrary.214 Most intersexed infants are not in any immediate danger that would exempt a physician from receiving informed consent to operate.215 Even when intersexed infants have medical conditions that require surgical intervention on an emergency basis, the emergency aid can be given without removing any part of the child's body that is not immediately harming the child.216 Physicians have relied upon the emergency doctrine to perform full sex change operations on children.217 The argument is that if a parent were to learn that their child was intersexed, they might raise their child without a clear gender identity thus causing the child psychological harm.218
Additionally, under the guise of an emergency situation, parents are placed under unnecessary time pressure to decide whether or not to consent to surgery. They are encouraged to make a decision about surgery in the first few weeks of their newborn's life. During the first few weeks after giving birth, parents may be stressed and anxious about their newborn's condition. They should be given more time to become accustomed to their child's body before doctors recommend surgery that is not medically necessary. This pressure forces parents to make decisions without seeking outside information to determine if there is a true medical necessity for the surgery.219 In some cases, children have been operated on even after their parents explicitly refused to give consent.220
The emergency doctrine was not meant to prevent hypothetical psychological harm to the patient or their parents, but to prevent death or serious impairment to a patient in an emergency situation.221 Physicians should not surgically remove or alter any part of an intersexed child's genitalswithout informed consent absent a true medical emergency.
A doctor may also be exempt from explaining the exact nature of the illness or treatment if it would be unsafe for the patient because it would cause them extreme physical or mental duress that would deteriorate their condition.222 This exception has also been used by physicians to lie to parents or disguise the truth so that they will raise their child without any doubts as to the child's gender.223 Reportedly, doctors do not explain intersex conditions to parents because they do not want to shock them.224 Parents are frequently told that their child must be operated on in order to repair a minor birth defect. Doctors do not always tell the parents the chromosomal make-up of their child, or explain the ramifications of gender reassignment.225 Although the parents may feel distressed upon learning of the child's condition, the parents' distress is not enough to exempt doctors from fully explaining the whole condition and the treatment options.226 The emergency exception applies to the patient's condition, not to theparents' reaction to the patient's condition.
Additionally, if parents do not understand that their child was born intersexed, they will not be in a position to understand the issues their child may later develop and his or her potential for gender dysphoria. If the exceptions to informed consent were extended to prevent harmful parental reactions to differences in their child, doctors would have free reign to repair all congenital abnormalities at the parent's cost without informing the parent of the abnormality or obtaining their consent for the surgery. The exceptions to the informed consent doctrine wereclearly not meant to extend this far.
Intersex children may also have a claim for medical malpractice based on violation of the law prohibiting female genital mutilation.227 In 1996, Congress passed the Criminalization of Female Genital Mutilation Act.228 Five states have also individually criminalized female genital mutilation.229
The process of removing or altering the genitalia of intersexed children is a form of genital mutilation as defined by the statute.230 The law prohibits anyone from authorizing or performing an operation on a female child to remove all or part of her genitals for other than health reasons.231 The statute explicitly covers ritual circumcisions, even if the child herself believes in the religious or cultural significance of the procedure.232 In section 116(c), the law specifically states that no account shall be taken of the effect of any belief that has led the person or their family to demand the operation.233 This Act holds the physician liable even if the family believed that the operation would be in the child's best interest and it was standard practice in their ethnic or religious community.234
According to the Act, the only way that genital operations can be legally performed on female children in the United States is if the doctor can show that under section 116(b)(1), it is necessary for the health of the person on whom it is performed.235 As the Colombian Constitutional Court found through its extensive international research, there is no evidence that most surgery performed on intersexed children is done for other than psychological reasons.236
When an intersexed child is operated on to normalize his or her genitals, it is also part of a cultural tradition. Parents want their child to look like other children in Western countries, or as close to "normal" as possible.237 In some Native American cultures, India, the Dominican Republic, and Papua New Guinea, intersexed people are accepted in society and occupy a specific cultural and social position.238 In those cultures it would not be considered beneficial to the child to alter the child'sgenitals.
In the United States, intersexed children are operated on in order to make them look like other children who are not intersexed. Although some medical conditions might endanger intersexed children and therefore make the operations beneficial, this is not usually the case.239 Most doctors who agree with genital operations for intersexed children claim that the surgery is necessary to protect their mental health.240 However, no studies have been done that support the question of whether or not genital reconstruction and hormones actually protect the mental health of the patient any better then counseling andeducation.241
More than 400 intersexed people internationally have contacted ISNA in support of its opposition to genital reconstruction surgery on children.242 The Constitutional Court of Colombia noted that doctors could not find any intersexed people willing to speak in support of such surgery on children.243
The congressional findings on the practice of female genital mutilation in the United States are particularly relevant to the issue of genital surgery on intersexed children. In particular, Congress found that female genital mutilation harms women both physically and psychologically.244 They found that the practice violates both federal and state constitutional and statutory laws.245
The damaging physical and psychological effects of genital reconstruction surgery are identical to the effects of ritual female circumcision. In both cases, the surgery may result in pain, scarring, and the inability to achieve orgasm.246 Congressional findings that females should not be subjected to the loss of any part of their genitalia for cultural reasons is directly applicable tointersexed children.
The Act indicates that parents do not have the right to give consent to nonessential genital surgery and doctors do not have the right to perform such surgery even if it will make the children assimilate with their ethnic and religious community.247 The statute only applies to female children.248 If taken as such, the statute may violate equal protection.249 However, the Act does not define "female" by genetic make-up or external characteristics. Arguably, most intersexed children fall under one definition of "female" or another. Thus, intersexed children who have their clitoris reduced or other genital parts removed seem to have a strong claim ofassault under the Female Genital Mutilation Act.
The United States should consider international standards for the treatment of children when considering the legality of genital reconstruction surgery. One of the main standards by which to judge the international consensus on children's rights is the Convention on the Rights of the Child.250 The United States was one of only two United Nations member countries that did not sign the Convention on the Rights of the Child.251 Despite the fact that the United States has not signed the Convention, it is an internationally accepted standard that should be considered byU.S. healthcare practitioners.
The Convention recognizes the rights of children independent of their parents by allowing them to veto parents' decisions on issues of health, education, and religious upbringing.252 The Convention specifically states that a child should have input into all decisions affecting him or her.253 Because the decision to alter a child's genitals will forever change the course of the child's life, particular care should be taken to involve thechild in this decision.
The second international agreement that is relevant to the treatment of intersexuals is the Nuremberg Code, signed by the United States after World War II.254 The Nuremberg Code prohibits countries from conducting experimental medical treatments on patients without their express informed consent.255 Since genital reconstruction surgery has only been in practice during the last thirty years and no studies have been done to prove the procedures effectiveness, critics argue that genital reconstruction surgery is still experimental.256 If the procedure is an experimental procedure, then the level ofconsent required should be higher.
Other countries look to the U.S. medical establishment in developing standards of care.257 It is important for intersexed children around the world that doctors within the United States make a concerted effort to provide parents and children with all available knowledge regarding intersex conditions before making the recommendation to performgenital reconstruction surgery.
Through its research and publication of many of the facts about intersex genital surgery, the Colombian Court has opened up a worldwide medical, ethical, and legal debate. However, rather than following the Colombian Court's decision, the world should heed the court's advice. Diversity should not be "a factor of violence and exclusion," but rather it should be "an irreplaceable source of social wealth."258 The court, paraphrasing Johns Hopkins University professor, Dr. William Reiner, challenges the world to listen to intersexuals and to learn to coexist with them.259
With those words in mind, future legal decisions in the United States and abroad should prohibit hospitals from performing childhood genital reconstruction surgery when it is not medically necessary. The current insistence on genital "normalizing" surgery can be explained by our society's obsession with physical appearance and our fear of people who are "different."260 However, as the Americans with Disabilities Act and other anti-discrimination laws integrate more and more people with different physical characteristics and abilities, society will begin to accept physical differences as a natural and positive part of being human.261 At the point that our society makes room for the intersexed through laws prohibiting gender reassignment surgery and unnecessary genital reconstruction surgery on children, then people will begin to acknowledge the existence of intersexuals. When faced with the fact that 3% of the population has chromosomes, genitals, and sexual characteristics that are different, teachers will need to modify sex education courses. Ideally, children will learn that every individual has unique sexual characteristics that help make up their gender identity and sexual preference. Through open discussions of growth and sexual development, intersexed children will learn that they are not alone, and others will learn that intersexuality is a common condition that may effect someone they know.262
d1. Staff Attorney, ChildLaw Services Inc., Princeton, West Virginia; J.D., City University of New York School of Law at Queens College, 2003; B.A., University of California, Santa Barbara, 1996. I would like to thank Professor Ruthann Robson for her guidance on this paper. I would also like to thank Renaldo Wilson for all of his hard work, without which this paper would not have been the same. I am appreciative of Paula Berg, Rosaria Vigorito, Chris Gottlieb, Rocco Robilotto, Bill & Corey Poole, Liz Haas, Julian Rozzell, my parents, and everyone else who supported my efforts to publish this paper.
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